Ulcerative Colitis Tips


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Fighting Through My Life With Ulcerative Colitis

Introduction:

Hi!, My name is JA, I am 21 years old, I was diagnosed with UC when I was 15. I am from Anchorage AK, I love being outdoors, I ski, hike, fish, run, swim, play soccer, and anything active really. I currently attend college at OSU and am hoping to get into Pharmacy school.

Colitis Symptoms:

Relatively recently (within the past month) my symptoms have gone into remission for the first time since being diagnosed 6 years ago.

Colitis Story:

I guess I will start from the beginning, when I was 15 I started seeing a lot of blood when I went to the bathroom. After about a month I told my mom about it and we went to see a doctor. A referral to a GI and a colonoscopy later I was diagnosed with an incurable disease…bummer. As I said in my bio I am super active I loved running and the UC didn’t affect me too bad in high school. The doc put me on Mesalamine (rowasa and asacol) and that seemed to do the trick for a while. But I hated taking the enema and any time I missed a does I would start bleeding even if it was only a day. But being what I was (a fifteen year old girl in highschool) I ignored the blood because it didn’t really affect me that much anyway, I had no urgency or pain, I figured so what if I bleed a little bit. I still could do all the sports I wanted so I wasn’t concerned with my long term health.

Unfortunately in college it progressively got worse as the years went on. I tried to push through it but it didn’t work. I switched GI’s twice and started going to a special GI clinic near my school where the doctors seemed a little more helpful. Between my sophomore and junior year of college I had four colonoscopy’s and each one had worse news. I tried every diet under the sun but nothing seemed to work. I still tried to work out but I was unable to even really go on runs by the end of my junior year because I needed to use the bathroom so much. I couldn’t even sit through a test. I had to register with my school’s disability services to get a special testing set up for me because it was getting hard for me to sit through exams. I also lived in my sorority my sophomore and junior year and I would get up at 5 am sprinting to the bathroom because I couldn’t even get through the night. The doctors put me on predinisone but it didn’t have much of an effect and I have been off and on for about 3 years. I have also tried flagyl twice and I am pretty sure both times it made my symptoms worse.

Worst of all I could barely get to college because it was so stressful for me to fly because I didn’t know when I would need to use the bathroom. This last summer it was the worse it has ever been. I work as a pharmacy tech at an intravenous pharmacy clinic over the summer and many days I couldn’t make the drive home without having an accident. I would constantly have to get up in the middle of compounding medication to use the bathroom. I was so fatigued from the anemia I was constantly living with I was tired all the time, I honestly still don’t know how I got out of bed half the time. Sometimes I was stuck on the couch all day with stomach pain, severe cramps, diarrhea and fatigue. I would still go on hikes but would be using the bathroom constantly and would always be tired and dehydrated. I was constantly worried about where a bathroom was, even if I was just walking my dogs. No matter what people say it’s embarrassing to be consistently worried about where the bathroom is and makes you not want to hang out with people. I couldn’t go on trips with my friends. It was hard for me to focus because I was so tired. Basically I couldn’t be a normal college student, the supposedly best years of my life were turning out to be the most stressful as my health slowly deteriorated. My doctors were trying to get me Humira for about 5 months but my insurance didn’t approve it even with the 2 appeals I sent in. After accepting the fact that I would never get Humira I agreed to try the remicade even though I was very reluctant, because none of my previous medication have worked.

I have now had 2 infusions of remicade and it really ended up being a miracle drug for me. Within three days my symptoms went away, I am talking no blood and only going once a day. This is from tons of blood with upwards of 10 bathroom visits a day. I no longer am on the lialda and I am tapering off of the prednisone. Its hard to believe I lived every day like that for all those years and still managed to get through college (barely) and do everything I did. I still don’t know how I managed it, I just didn’t want the UC to control my whole life and I fought it every step of the way. But I was tired of fighting and I can’t even begin to explain the relief remicade has given me. The three hour infusion time is a drag but it is nothing compared with all the time I spent in the bathroom. I also see the irony that all these years I have been mixing the medication for other people which could have given me the relief I was so desperately craving. But now that I have it, it has given me my whole life back, I can run, swim, hike, and go for road trips like a normal college kid! Its my senior year and I have never felt better, I hope the remicade continues to work and I am happy to talk with anyone, I know how lonely it can be, I never talked to anyone about my symptoms and I think that was a mistake.

Where I’d like to be in 1 year:

Graduating college, going to pharmacy school, and still no UC symptoms! Off of the prednisone for good!

Colitis Medications:

Inaffective medications I have taken:
Asacol, Rowasa, Lialda, Canasa, Prednisone, Flagyl, Hydrocortisone enema

Remicade is working!

written by JA




11 Responses to Fighting Through My Life With Ulcerative Colitis

  1. Lisa OH
    Lisa October 26, 2012 at 6:38 am #

    Hooray for you!!! When u say you went to OSU, do you mean Ohio State Univ? Cuz I went there, and am a HUGE Buckeye fan.

    I am so happy Remecaid worked for you. Yippee for you!! It can be a miracle for alot of people. I was diagnosed in Dec, 2011 and put on Asacol, prednisone, canasa, some others I can’t remember right now, and Remecaid. The GI who started me on it was extremely pessimistic about it, and 3 infusions later, it did not work for me. Long story short, my colon became toxic & I had to get it out pronto. Currently waiting on surg #3 in 3-step jpouch plan. It’s GREAT not to be sick, huh??

    Take care, hope you continue your remission for a long, long, long time:)

    Lisa

  2. Noel October 27, 2012 at 3:11 am #

    Hi JA,

    My husband and I honeymooned in AK this past June. Anchorage, Denali, Seward. Flew in.

    I’ve had UC several years now, and Remicade has also been the miracle drug for me. This December will be a year on Remicade. Before that, I was going as much as 24 times a day, and having accidents to and from work. I feel normal again.

    Any idea if it’d be hard to get Remicade in Anchorage?

    • JA
      Julie Anne October 27, 2012 at 11:30 am #

      Thanks everyone!
      Noel, no the pharmacy I work at actually administers remicade so I don’t think it will be a problem. and Bev I tried probiotics before such as LSV#3 and they didn’t change much. I still try to eat a lot of probiotic yogurt because its good for your intestinal flora, but as far as probiotics being able to reduce inflammation it is ineffective for me.

  3. bev October 27, 2012 at 10:40 am #

    Hey JA!!

    It is hard to believe when we look back when we were so sick, that we were actually able to go through life like that! It makes even the most mundane things so much harder when you feel so crappy.

    I am so happy that you have FINALLY found something that actually worked for you.

    OMG, I’m so thrilled that you HAVE YOUR LIFE BACK!!! What could be better than that, right?! Hurrah!!!!!

    One more thing…just because it also works, add a good probiotic, like the one I take (ULTIMATE FLORA CRITICAL CARE by RENEWLIFE), or something comparable…and after a few weeks or even a month, you may just see even more improvement to the point that you may never need remicade again!! I’m taling total remission. Imagine…no more meds at all? It worked for me. I’ll never go back to meds. You are in a great place right now…just perfect for incorporating probiotics into your daily routine. You may be surprised!!

    Cheers,
    Bev:)

  4. shelly in maine October 28, 2012 at 6:52 am #

    Hi Julie Anne,
    Please check into probiotics and all the recent research for overall health/immunity/gut flora, etc. It may seem they didn’t help, but they do with no side effects. I had to keep raising the amount for it to work for me so i am on Mega doses…Rx of VSL 3.
    Continued good health and with the Remicade.
    Best, Shelly

    • bev October 28, 2012 at 7:30 am #

      Shelly, I’m so glad to hear you say that!

      It’s true…I know because there were a couple of times that I had to double up on the amount that I was taking, for a week in one case. I really think people bail out too soon alot of times…I’m convinced that probiotics will work for eveyone, given the right amount of time, and the correct dosage, which can definitely vary, depending on where you’re at at any given point.

      Thanks for posting this!! Fabulous…

      Bev:)

      • shelly in maine October 28, 2012 at 12:40 pm #

        Hi Bev,
        Thanks and right back at ya!
        Colonoscopy soon? Best of luck…especially with the prep!
        Best, Shelly

        • bev October 28, 2012 at 3:31 pm #

          Shelly!

          Actually…I’m still up in the air about the colonoscopy…it’s supposed to happen November 15th…I’ll keep you posted…

          Cheers:)

          • shelly in maine October 28, 2012 at 4:01 pm #

            I don’t blame you for still waivering…hard to upset the applecart! If it ain’t broke…! :-) :-)

  5. Kyle
    Kyle October 29, 2012 at 2:49 pm #

    Sounds like we are in a very similar place with our UC. I just finished my second Remicade infusion on Friday and am currently tapering off the predisone. Thank the Lord! I am ready to be done with the moon face : ) I have been experiencing a similar story to my Remicade treatments, things seem to be going very well. Praying everyday that they continue and get me to a place of remission. I have had quite a go round with UC these past couple months. Rocked my world, but made me appreciate everything that the Lord has given me! Having support has been so huge for me, people who I can count on when things go south, my wife has been such a trooper! Currently, I am stil experiencing stomach tightness but nothing like I have experienced in the past. Glad to hear things are going well for you, I hope they continue, and you are able to meet your goal of graduating college. Best of Luck to you!

    Kyle

  6. ashley April 21, 2013 at 11:28 pm #

    Hey JA!
    Im so happy the remicade is working for you! i was diagnosed with UC in 2010 and am just beginning to give medications a try. I’m on my second day of a 2 month prednisone taper. my dr had me also start Asacol HD but i seem to be having an allergic reaction to it (hives). He wants me to begin remicade as i start to taper off of the prednisone, so in about a month, so that when the steroids are completely tapered, remicade will already have started to work.
    i am a pharmacy tech too! (outpatient/stressful) And im currently waiting to hear if i have been accepted to nursing school for this fall -august. Its encouraging to hear that the remicade is working for you because its so scary trying something new, and i really want to get my symptoms/inflammation under control before i begin an intensive nursing program
    It scared me though, that the Remicade lowers your immune system, because ill be working in a hospital setting for up to 3 days a week. I also have 2 small kids who bring home lots of sicknesses from their daycare. So it is very scary to be potentially putting myself at risk for all types of infections. I just don’t want it to end up that i am sicker than i would have been without it!
    Also, even at my worse flare, i was going to the bathroom maybe 8 times a day for a week period, ive never had extreme frequency. My flares also seemed to come at times of extreme stress, like exam times in my hardest classes (mind you im crazy and work full time, go to school, and have a family & household).
    Well, i wish you continued success with Remicade & continued health and happiness, and i really hope you get into a great pharmacy school. I know that one thing this awefull disease actually gives people like us is strength and perseverance
    -Ashley (28)

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